Skip to main content

10 things I would tell the newly diagnosed about what they will face #BlogBoost





I wish I had been prepared for the impact or what was going to happen in my life from chronic illness. Realistically. I had a firm belief back them I could limit the impact by choosing a specific job and as long as I was engaged mentally, it didn't matter I was hindered physically. I didn't think of the radius pain has. It never occurred it would get worse, complex and the impact would affect all of me and all of my life. If I wish for one thing I could have known that first day of diagnosis... is the impact it was going to have.


  1. Your social life will change: You will go out less often. You will lose friends. Have less friends and likely gain a lot of online friends. There a vibrant online communities for the chronically ill. We reach out to them to feel less isolated and to calm and fears we have about our illness. To share our concerns, fears and coping. However, in the real world we may not have much energy reserves to go out and do activities often. We may cancel plans when we feel worse we expected to. Some people will drift away because of this. Those that remain tend to be the best influences on us for support.
  2. The 'cure'talk: People will suggest remedies, cures, treatments, diets and medications they heard on the news, online, from Facebook or from their Uncle Frank who swears by it. You will tire of it. Maybe you will even try some of the recommendations like that chiropractor of your work associate or the acupuncturist your hairdresser mentioned. You are new to this chronic illness game and there are so many things to try. But when you have, the recommendations? Will get tiresome. Even though you also know they all come from a good place. When it comes from a good place it is hard to say anything about it, even when it is the 10th meme you have seen on the same thing, that year anyway. People just want to help. They see something that maybe you have not and they send it to you, well intentions. Nevertheless you will see a lot.
  3. Lifestyle: People will comment on your lifestyle and the changes you should make to it because it might help with your health. Exercise is mentioned often by people and doctors. As is losing weight. And dieting, often contrary diets as well. While You on the other-hand will actually be trying a whole lot of changes from exercise to mediation, to chiropractors and physio. One thing I learned early on was there was little help with a treatment plan. I had to go out there and try to find things that might help me myself. All of these are essentially out of pocket, with a minor amount sometimes covered.
  4. Treatment: In the beginning you will likely believe medications will do something profound and help a great deal. When this belief is broken you will learn medications are a long process of trial and error. Of weighing the side effects with the benefits. Finding the right medications being the first aspect of treatment however.
  5. Research: Right of the get go you will believe your doctor. His recommendations and medications. Soon though you will begin to pick things up, do some research and join some support groups. You'll begin to gain some knowledge on your disease and options. Couple years into the chronic illness lifestyle and you will know more than your doctor about your specific disease. It just happens. As an informed patient you will be able to know if the treatment you are getting is sufficient or if there are better options.
  6. Work will suffer: It becomes more difficult to find a job. And a struggle to figure out what and when to disclose your illness. It can be difficult to maintain full-time work. We often struggle with it and have to seek some sort of accommodation; flex work, working from home, less hours, part-time. work accommodations for our work-space. Trust me this is a challenging one to figure out and adjust to.
  7. Stigma: With invisible disabilities you will encounter people who will doubt you. They won't believe you are as sick as you claim. Or that you even are. They will claim you are fine one day, sick another and it makes no sense. Or that you are complaining, lazy, just depressed (making you less likely to discuss comorbid depression). You can have stigma in the workplace. In the medical field, where they minimize your pain due to gender or age. In your family. In society as a whole. 
  8. Relationships: relationships will be strained and stressed with this extra stressor. Not all partners can handle the extra stresses of a partner who is chronically ill. Some survive but they have to communicate about the stresses to deal with them. The partner, feels more stress as well. Our illness affects those around us. And we have to acknowledge the impact and support we get. While other people, who are single, sometimes fear getting into a relationship as they feel they would 'ruin' someone's life and they fear disclosing their health. Never giving the person their choice of who to care for. 
  9. Pacing: the faster you learn you need to pace your activities during the day and week the happier you will be. We learn we do too much and we feel much worse, then have to recover. So we learn we have to pace. 
  10. Limitations: Likewise we have to learn our limitations. Jobs we cannot work (Shift work or repetitive lifting, heavy lifting). Things we cannot do (cleaning the house in one day). And recognize in a day when we hit a limit, knowing when to stop. Knowing on some days due to pain or fatigue our limit is less than other days. 

Yet that is all part of the process. The friends we have are the ones a person wants on their side. A spouse that stays is one that understands illness comes to us all. We figure out a work one way or the other, something that works for us in our situations. We adapt and we change. Life changes but we cope to adjust to those changes.
/



Post a Comment

Popular posts from this blog

Signs the pain is getting the best of you

100 Symptoms of Fibromyalgia

There was a site that had this and I had linked to it on Tumblr but it is gone. So I had to hunt down someone who found my post and posted the whole thing in a forum. Anyway it is around but I'm posting it here so I will not have to hunt it down to reference it. Now we all know the major symptoms are the wide-spread pain, but our pain isn't just muscle pain... it can be nerve types of pain as well, and the fatigue and the insomnia. And even among symptoms there are some far more frequent than others, but it should be said we have categories... like the cognitive dysfunction, which is a broad one that has more than one symptom and we often just say fibrofog. The insomnia... more than one sleeping disorder. So the list is interesting.




GENERAL
__ Fatigue, made worse by physical exertion or stress
__ Activity level decreased to less than 50% of pre-illness activity level
__ Recurrent flu-like illness
__ Sore throat
__ Hoarseness
__ Tender or swollen lymph nodes (glands), especiall…

Getting through the high intensity pain flares #Blogboost

The crowded me out of the brain. Making no room for anything else. Distraction was impossible. You feel almost frantic with the pain but must be still.

What do you do? To get through it when you have no distraction?

I ask me this as I am really in the depths of a 9 level frantic level of pain right now. Hoping maybe some writing will be a distraction, but it isn't. As I said, the pain crowds the brain. I have to focus real hard to write and my head isn't clear. Too much pain to focus well. Things become quite difficult to do. 

I will say this: We cannot function. We have to just cope with the pain.

But we are Immersed in the pain, we what do we do?
We can and should rest and get through it the best we can. Here are some of the things I do to get through it.

Relaxation breathing: I can't meditate when in high levels of pain. It just makes me think about how much pain I am in. Just not a good idea. But I do do relaxation breathing. I close my eyes. I focus on my breathing. I even…